Dealing with Chronic Diseases and Chronic Pain that seems to steal your entire life...

Sometimes I feel as if I write the same old song and dance, over and over again. Yet, as I was glancing as some email newsletters I get, once again for the Thousandth time, there it is in my face, talking about not being able to travel "too far away from home", or how these illnesses take you so far down in fatigue that the simplest things you used to be able to do, now are like monumental achievements.

I always try and bring myself back to "Okay, it could be worse"?! Well, what does that mean for any given person... worse as far as I am not in the bed 24/7/365? Worse that right now I am "well enough" to not be on the sofa for many hours of the day? Worse as in, I can still walk without a cane or a walker, I still have my eyesight, I still can talk, and okay all of that "same old stuff". Worse as in, gosh there are so many others out there that have it "worse"? That is dependent on who is viewing it, at any given time. For one person that might mean a "bad" day or two.
For others it may mean they had to cut a vacation down and come home a day early, or cancel dinner plans for an evening, or decide to order take out because they were too fatigued to cook. I've "entered" a couple of different items for this month. One is sponsored by the Sjogren's Foundation, due to April being Sjogren's Awareness Month. Each day we must think of "ONE" word to describe "Sjogren's". The other sponsored by WEGO Health, is April is "Writer's Challenge Month". Each day they give us a "prompt" and we are to write about how that particular thing effects us. Some medical and some just life as it is stuff.

Over the past 8 or so years, once all of the autoimmune issues came to light, I had high hopes that with a more "specific" diagnosis (or more than one) between the doctors, myself, medications, and taking care of "me" would mean finding a much better quality of life in my future. Now, each day, I come to terms with the pure and simple truth. Unless something miraculous happens in the thorns and arrows slung at all of us with these hideous illnesses, I nor anyone will ever find they have a "better quality of life." I think we "fool" ourselves into thinking, "we must remain focused on the good, on the "half full" rather than half empty glass. We must think that against all odds, look how many others have out smarted all types of "basically deadly" diseases, and are here to witness to us that it can and does happen.

Yet, me putting on that happy face, yet inside deep inside both hips it is like a ball of fire inside, churning, aching, burning, and how do I "ignore" that kind of pain? Then I find out last night, and I mean very late evening, that after waiting 2 weeks to see my orthopedic doctor who has done both knee replacements, and much more now does NOT take my insurance? And the woman on the phone was an absolute witch. When I began to ask about me paying for the visit, she snapped back at me, an office visit is "$175.00"! Well, in the first place they should have KNOWN right away, and in fact when I called and made the appointment, she even looked at my file and saw that I had the insurance and never uttered a word that he was no longer taking it! Well, that leaves me in a world of hurt, now over 2 weeks. If they had told me that in the very beginning, I could have either tried to find another orthopedic doctor, OR just paid cash for the visit and the injections.

I was still so totally upset by the entire ordeal, that I called his office again this morning and spoke with HIS nurse/office manager. She told me the "visit" for me since I am an established patient is $75.00, then the injections are $100.00 each. So, the lady from the entire doctors building didn't know the circumstances, and didn't realize I had been seeing him for many years. I can also say that if I had been able to get hold of him, he would have charged me less, and did the injections. Him and I have been through several situations involving my own self, and then a surgery he did on my Mom, so he is well aware that when I ask something or say something, then it is something I am extremely concerned about.

Then you take this new stupid insurance, which means if I see another specialist that I've not seen in a long while, then we have to go back to square 1 and get a "referral" done to satisfy the insurance company. Fortunately my neck and shoulder orthopedic surgeon IS taking the insurance!!! So, even though I have to wait another week, which sucks because today is more than pain, hurt, despair... almost intractable pain in my very lower back and especially my hips, that even higher on my waistline hurts, at least I can see someone I know and trust. He has a "jackass" bedside manner. But, if you overlook that, he is EXCELLENT or more than that, THE VERY, VERY BEST Orthopedic Surgeon in the US, as far as I am concerned.

When I was first sent to him due to needing a complete reverse shoulder replacement, of which not many specialists do them, we kind of got off on the wrong foot. He is one that prefers an "less educated" person, as far as their medical situation. He is not thrilled over someone like myself, that comes in, with all of my own home work done, and knowing just about what the issue is with me, then telling him. He is not very happy about a "patient" that he feels thinks "they know" more than he does. Of course I don't BUT, when it comes to myself, my own surgeries, illnesses, and all I've been through in many ways, I am almost an "expert" in some things with my own stuff.  Well, when I went in and seen him for the shoulder, gave him the "low down" on the entire mess I had been through, where the pain way, how many other "scoped" surgeries I had, and in the last my other orthopedic surgeon told me that there was "nothing else" their to repair. The next step HAD to be a "reverse shoulder replacement". And it took weeks and weeks to find one. Then same with my neck. Right after the shoulder surgery, within 3 months I began to have once again a "similar" issues with my shoulder blade. As I again had done, researched it all, and the pain "seemed" to be coming from my cervical spine. Well, he did a special CT on it, since I can't have MRI's, and that CT was terrible. The tech that did it, was not in the right place to do business, and he really was NOT elated at all. He "went off " on me, stating just because I do research online, does not make me an expert, and he really got pissed about my "input". So, I am not sure what happened, but within a week or so, he decided my "theory" maybe right. Since my other orthopedic problems never do "show" on CT's, MRI's... whatever kind of "scan" they do, it is always MUCH WORSE in that joint, than what it showed. So, that was my continued premise. He decided that I could be right, thus he set up to have me on the operating table, and do a 4 level disectomy, and also fusion to at least two of them.

Well, as sure as I am writing this, for the most part, what I had "said" and drawn in my own conclusions, were almost to the "letter" when he opened up the neck and began to see the issues. That is why I say, he is an excellent physician, one of the very best in orthopedics, yet his bedside manner sucks... and once I could look past that, and HE could ACCEPT that in some ways I COULD BE correct, it worked out fine.

Thus, having to wait yet another over a week to get some relief sucks.On top of everything else, I am not so sure about this "forminal" lumbar injection that is supposed to be done Thursday. Now I found out, it is not the "anesthesia that they concern themselves with, as far as the patient driving home. It is the epidural injections in themselves. In that part of the spine, it may make my legs feel a bit "heavy" or numb a bit after its done. Not everyone has that, but some do. Thus the reason not to go alone. But, when you have no one else to drive you, what the hell do you do? Forget it? I mean Mom and Jim both can go, but when it comes to driving, that will be me. Neither of them cam drive to Dallas and back.

So, now I also know this orthopedic doctor could also do those injections too. So, do I hold off, and then have then done later by him...


These are the very examples of why life deems itself much, much more frustrating and difficult when you are suffering from chronic illnesses and/or pain... ALL of it is a "PAIN" in one way or the other....